September is Pediatric Cancer Awareness Month. Day 29 of my celebration of Nick.

January 1987 – the days and weeks after Nick’s death were a blur. It took a while for us to stop setting four places at the dinner table and an even longer time for me to walk by his room and face the fact he wasn’t there. Before he died Nick had told me if I wrote him a note, and left it in his room he would come back and get it. I dropped that note in his dresser drawer and every day I checked; it was there until one day it wasn’t. It took years for my mom to tell me that she had picked that note up for safe keeping. In retrospect, I think you want to believe in anything you can, even the things you know are not possible.

This is Nick’s funeral program. The story behind this is one of my favorite Nick stories. That picture on the front is from a classroom assignment on his first day of second grade. Each of the students was asked to write and describe why they were special. When Nick turned his assignment in the teacher asked him why he didn’t cut on the lines like everyone else did to which Nick responded, “Because my light bulb has rays” – yes it does, Nick, yes it does. Your light bulb certainly seemed to shine brighter than everyone else’s, even though it went out way, way too early.

We held the viewing for Nick on Friday January 16th. There were so many people flying in from out of town, we wanted to ensure family and friends could be there. I remember the funeral home. I remember playing with friends and my cousins. That seems odd to me to say, I was playing, but then I have to remind myself I was only 10 years old. I remember my cousin, Joe, throwing his Care Bear into a chandelier. I remember one of our neighbors, and Nick’s good friend, Kurt, sitting off to the side, sobbing. I went and sat with him and rested my hand on his. No words were exchanged but we both knew. There were so many people at his viewing. It seemed that the stream of people never ended.
His funeral mass and burial was the next day on Saturday, January 17th. It was blustery, cold, and windy that day. There are bits and pieces of his funeral that I remember but that is when things are a little less clear in my head. I remember walking up to the alter and climbing the stairs to do the readings at his service. I remember a church that was bursting at the seams, I do not think there was an empty seat or a dry eye in the house. I still remember the sermon delivered by the priest. I remember Nick’s dear friend, Norman, sitting with his father and crying so hard. But mostly I remember walking out of a packed church with all eyes on us and burying my head in my dad’s jacket. I did not want people staring; why could they not just leave us alone? I did not see Nick’s coffin lowered into the ground at the cemetery. I went back to the car and sat in there with my grandmother. We sat in silence. I remember that. I also remember that for weeks after Nick died, our fridge was constantly full of food. It’s an odd thing really, because do you really want to eat much during grief? We certainly didn’t. Although I still remember an Eli’s Chocolate Chip Cheesecake that someone dropped off and was the first time, but not the last, that I had cheesecake.

The funny thing and hard thing about death, especially death after an illness, is that after a few weeks, maybe a couple of months, life goes back to normal for everyone else. People stop asking how you are doing. Life goes on around you and people move on. But for us, life was irrevocably changed forever and moving forward felt like carrying a huge boulder on your shoulder.

From the time Nick died until the time I was about 14, I spent every night on the floor in my parents’ room. I didn’t want to be in my room alone. I did not want to be away from my mom and dad. To this day, I am still not sure if that is because I was scared of dying, scared of my mom and dad dying, or just trying to make sense of what happened. But for some reason I couldn’t sleep unless someone else was in the room with me. Often sleeping in Nick’s sleeping bag, with his beloved stuffed animals. Even still, being in a house alone makes it hard for me to fall asleep.
After Nick’s death all I wanted to do was find a way to make things right, to “fix” things. To this day, that is still a dominant part of my personality. To fix things. I see a problem and I want to fix it and make it better. While this can be an admirable trait, it also can lead me to put way too much pressure on myself and stay in situations way longer than I should. This is something I still struggle with often. I tried to be the perfect child. I still put enormous pressure on myself to not fail. I felt the need to somehow try to embody both myself and Nick. It took me a long time to realize I would never be able to fix things with Nick dying. And that I would never be both Nick and Jenny. I was Jenny and needed to embrace that. As much as I could try and live my life for the both of us and try to fill the void that Nick’s death left, I would never be able to do that. And Nick would not want that. Nor would my parents want that.

To say that Nick’s death impacted me would be an understatement. Nick’s death defined my childhood and continues to influence my adult life. To this day, it still impacts the lens with which I look at things. It made me more vulnerable, it made me more nurturing, it made me more compassionate and empathetic. It also made me stronger. It made me more determined and resilient. It pushed me to always set high expectations and standards. It made me loyal and put a premium on integrity. Yet somehow it also made me fully ready to love with an open heart. It made me appreciate each and every day, every moment, every breath, that much more. And it made me who I am today and it made me a better person. I still wish the fates of the universe would have dealt me a different hand to teach me these lessons.